Barriers and facilitators to accessing rehabilitation and healthcare services for persons with disabilities in Gauteng, South Africa: perceptions of policy stakeholders

Background and Objectives: South Africa is committed to enhancing rehabilitation services by 2030 through the National Rehabilitation Policy and the United Nations Convention on the rights of persons with disabilities. However, limited research focuses on rehabilitation services in KwaZulu-Natal (KZN) Province, South Africa. This study aims to provide insights from stakeholders on rehabilitation services in KZN Province focused on infrastructure, referrals, human resources, and multidisciplinary practices. Methods: Using mixed methods, we conducted focus group discussions, interviews, and surveys involving 99 stakeholders, including rehabilitation practitioners, district and provincial managers, and social development representatives from eThekwini, AmaJuba, and King Cetshwayo in South Africa. Descriptive statistics and thematic analysis were used for quantitative and qualitative data. Results: Public institutions reported inadequate referral pathways (2.9 out of 5) compared to private institutions (3.4 out of 5). Acute rehabilitation referrals primarily targeted secondary or tertiary facilities. Disjointed pathways, a lack of protocols, delayed referrals due to various factors and insufficient staff were identified. Physiotherapists were disproportionally more prominent, while social workers, psychologists and bio-kineticists were scarce. Both public (93%) and private (73%) care exhibited high doctor-to-patient ratios. Rehabilitation service disciplines were limited and fragmented, especially in rural areas. Thirty-four respondents (81%) stated no designated rehabilitation services units in their respective institutions. Conclusion: Rehabilitation services, though present at all care levels in KZN, mostly begin at tertiary levels. Local-level rehabilitation is non-existent, with the public healthcare system relying on community rehabilitation workers. Referral pathways require standardization, especially at the local level. Enhancing primary healthcare’s rehabilitation focus by bolstering workforce recruitment can significantly improve multidisciplinary practices. Expanding intermediate care facility licenses can alleviate system strain on KZN’s public health sector.

The sexuality of people with disabilities in South Africa, as in other places in the world, has been a site of exclusion and oppression, with many myths and misconceptions being held. In the context of significant social inequalities and a major HIV epidemic, the exclusion of people with disabilities from being able to live fully sexual and sexually healthy lives presents an added personal burden. There is a small but growing body of research on disability and sexuality in South Africa, focused mostly on issues of sexual health risk. There is less focus on the social and interpersonal experiences of sexuality from the perspective of people with disabilities themselves. This chapter describes a participatory action research project, which aimed to challenge the myths about the sexuality of people with physical disabilities in South Africa. The project adopted multiple research methods, including innovative media and narrative methods, to explore societal attitudes as well as the subjective experiences of people with physical disabilities. The use of collaborative media methods allowed participants to challenge dominant, often stigmatising, representations of the sexual lives of people with disabilities, providing a personal lens in which to convey their experiences of sexuality, masculinity and femininity. (physical disabilities, South Africa, participatory research, societal attitudes, sexual exclusion)

BackgroundStroke is one of the most common causes of morbidity and disability in South Africa, with the burden of stroke particularly high in rural South Africa.ObjectivesThe aim of this study was to collate South African (SA) physiotherapy stroke rehabilitation research.MethodA narrative review of physiotherapy stroke rehabilitation research conducted within the last 10 years in South Africa.ResultsStroke survivors in South Africa have poor functional ability at discharge from the hospital and have poor access to transport, work and education. Their caregivers experience strain and have a poor quality of life. Inpatient rehabilitation services focus on the medical model approach and patients are discharged into family care because of limited rehabilitation facilities. Physiotherapy interventions found to be effective in SA studies: longitudinal shoulder strapping, balance exercises in the community, task-orientated circuit gait training, saccadic eye movement training with visual scanning exercises for unilateral spatial neglect and workplace intervention programmes to increase return to work after stroke. Caregiver education alone and use of pictorial exercise programmes does not improve patients’ functional ability and adherence to home exercise programmes, respectively.ConclusionThere is a need to focus physiotherapy stroke rehabilitation on barriers that hinder full social integration of the patient, including return to work and improving carer support. Most research reviewed focused on description of the problems experienced; however, more intervention studies are now underway to develop context-specific interventions with feasible treatment intensity, frequencies and equipment requirements. Future research should explore new ways of improving post-discharge rehabilitation services. Examples of intervention research that may be beneficial in a SA context are mirror therapy, mental practice and patient-directed activities in rehabilitation.Clinical implicationsKnowledge of interventions that were found to be effective in this context will encourage clinicians to translate these findings into practice. Noting that outcome measures that are core for stroke rehabilitation are not included in some projects may remind researchers to consider them to make comparisons between different research projects.

Background: The United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) is a milestone in the recognition of the human rights of persons with disabilities, including the right to health and rehabilitation. South Africa has signed and ratified the CRPD but still has a long way to go in reforming policies and systems in order to be in compliance with the convention. This paper seeks to fill a gap in the literature by exploring what the barriers to the implementation of the health and rehabilitation articles of the CRPD are, as identified by representatives of the disability community. Methods: This investigation used a qualitative, exploratory methodology. 10 semi-structured interviews of a purposive sample of representatives of disabled persons organizations (DPOs), non-governmental organizations (NGOs), and service providers in South Africa were conducted. Participants were drawn from urban, peri-urban, and rural settings in order to reflect diverse perspectives within South Africa. Data was analysed using a multi-stage coding process to establish the main categories and relationships between them. Results: Six main categories of barriers to the implementation of the health and rehabilitation articles of the CRPD were identified. Attitude barriers including stigma and negative assumptions about persons with disabilities were seen as an underlying cause and influence on all of the other categories; which included political, financial, health systems, physical, and communication barriers. Conclusion: The findings of this study have important implications for strategies and actions to implement the CRPD. Given the centrality of attitudinal barriers, greater sensitization around the area of disability is needed. Furthermore, disability should be better integrated and mainstreamed into more general initiatives to develop the health system and improve the lives of persons living in poverty in South Africa.

Purpose Disabilities are increasing globally, which is attributed to the overall ageing of populations in affluent countries. This trend may differ in low and middle-income countries. This paper assesses the change over time in Years Lived with Disability (YLD) for South Africa and how this compares to regional and global trends. Materials and methods This secondary analysis of the Global Burden of Disease Study 2017 dataset describes the observed contribution of YLD to Disability-Adjusted Life Years (DALYs) per 100 000 people over the period 1990–2016, and forecast to 2030 using simple linear prediction. South African trends are compared to global and sub-Saharan African (SSA) trends to highlight the effect of HIV and policy implications. Results Globally, the contribution of YLD to DALYs has increased from ±21.7% in 1990 to ±34% by 2016, with high socio-demographic index countries having a higher contribution (49%). HIV, mental health, musculoskeletal, neurological, and sense organ disorders are the five main contributors to YLD in South Africa (54%). Removing the effects of HIV/AIDS and sexually transmitted infections on YLD, South Africa’s trend appears similar to the global trend, yet opposite to the SSA trend. Conclusion Our analysis shows there is a growing burden of disability in South Africa. Differences in trends with the regional and global patterns can be attributed to the high burden of HIV and non-communicable diseases in South Africa. Therefore, strategies are urgently needed to increase integration of disability and rehabilitation services into chronic HIV and non-communicable disease management. This calls for disability screening to identify functional limitations in routine data collection and case management. IMPLICATIONS FOR REHABILITATION South Africa has experienced an increase in disability prevalence over time. This requires strengthening of services such as mental health interventions, physiotherapy, optometry, and audiology, and linking major disease clusters, such as HIV and the NCDs, to rehabilitation services. The greatest contributors towards disability adjusted life years in South Africa are currently mental disorders (13.8%), HIV and sexually transmitted infections (11.8%), musculoskeletal disorders (10.4%), neurological disorders (8.2%), and sense organ diseases (7.5%). Routine data collection and case management needs to include disability screening to identify developing functional limitations.

<p>The South African Mental Health Care Actdefines mental health care provider as a person providing mental health care services to mental health care users and includes mental health care practitioners. Mental health care practitioner means a nurse, psychiatrist or registered medical practitioner, psychologist, occupational therapist or social worker who has been trained at an accredited institution to provide prescribed mental health care, treatment and rehabilitation services. For a South African mental health provider to render high-quality mental health care, treatment and rehabilitation services, that mental health care provider should have been exposed to theory and practical teaching and learning in Intellectual Disability (ID). One of the most relevant practical courses for intellectual disability in South Africa is offered by the Sunshine Association.</p>

Background: Participation comprises attendance and involvement in everyday situations. Picture My Participation (PmP) is an instrument intended to measure participation in children with disabilities, particularly in low and middle income countries.Aim: To investigate content validity and usefulness of PmP for measuring participation in children with intellectual disability (ID) in South Africa and Sweden.Methods: A picture supported interview with 149 children, 6–18 years, with and without ID. Twenty everyday activities were provided. The three most important activities were selected by the child. Attendance was rated on all activities. Involvement was rated on the most important.Results: All activities were selected as important by at least one child with ID in both countries. There were similarities in perceived importance between the children with and without ID from South Africa. The children from South Africa with ID were the only subgroup that used all scale points for rating attendance and involvement.Conclusion: The 20 selected activities of PmP were especially relevant for children with ID in South Africa. The usefulness of the scales was higher for the children with ID in both countries. PmP is promising for assessing participation across different settings but psychometrical properties and clinical utility need further exploration.

BackgroundRehabilitation medicine plays an integral part in attainment of optimal functioning after injury or disease. The National Rehabilitation Policy of South Africa (NRP) (2000) highlights the need for access to professional health care services, redistribution and optimal utilisation of resources and research in the field of disability and rehabilitation. The government further ratified the Convention on the Rights of Persons with Disabilities (CRPD) (2007), which validate the urgency in advancing the agenda of persons with disabilities. This paper outlines the methodological plan for evaluating rehabilitation services in the Western Cape, South Africa against the aims and objectives of the NRP as well as its principles and concepts. The evaluation process further focused on specific articles in the CRPD that were aligned with disability, health and rehabilitation.Methods/DesignA mixed-method design was used to evaluate the alignment of rehabilitation services with the NRP in the Western Cape. Four rehabilitation study settings were selected to ensure that both inpatient and outpatient rehabilitation levels of care were covered at different contexts (rural and peri-urban). The sites were checked for the most prevalent rehabilitation-related conditions to ensure the identification of suitable instruments for measuring rehabilitation outcomes. Each study setting was linked to two researchers with one exploring the rehabilitation organizational structure of the sites and the other exploring the client outcomes after receiving rehabilitation services. Patients were evaluated at baseline and discharge, within seven days after admission and seven days prior to discharge. The evaluation was based on the rehabilitation organizational capacity to provide patient-oriented rehabilitation and the measurement of rehabilitation outcomes. Kaplan’s framework of organisational capacity was used in the context of each study setting. For the measurement of service users’ outcomes, the International Classification of Functioning, Disability and Health was used (ICF). Standardised outcome measures were adopted for the domains of impairment, activity and participation. The World Health Organisation Community-Based Rehabilitation guidelines were used as guiding principles and concepts as suggested in the NRP.DiscussionThis is a groundbreaking methodological exploration that offers both study methods and instruments to measure rehabilitation services at both in-patient and out-patient rehabilitation services.

BackgroundAcquiring a physical disability in adulthood necessitates a range of adjustments, with past research suggesting that some challenges encountered are unique to women. Moreover, several factors may complicate adjustment to an altered embodiment and difficulties in functioning after an accident, including insufficient rehabilitation and support services and problematic societal attitudes towards disability. In addition, women with disabilities are often excluded from health and social policy and programme development, an oversight that can result in support gaps.ObjectivesThis article presents the self-identified priority interventions of women with road accident-acquired physical disabilities in South Africa.MethodsWe conducted interviews with 18 women with road accident-acquired physical disabilities. The participants were recruited via snowball sampling. Interviews were conducted by experienced interviewers, who were home language speakers of the participants’ preferred language of communication. The interview recordings were transcribed, translated, and coded by trained, independent researchers.ResultsStudy participants identified three key areas of intervention requiring consideration in supportive intervention planning: the acute post-injury environment and healthcare infrastructure, transitional services and social inclusion interventions. These were identified as overlooked areas in which they required support to successfully adapt to limitations in functioning.ConclusionTo develop inclusive, accessible, and practical policy and programming for people with disabilities, exercises like those outlined in this research – eliciting intervention ideas from lived experience – should be conducted as they highlight actionable priorities for programming.

Purpose. Disabled people in South Africa have been included, for the first time, in policy documents on HIV prevention. However, little is known about how persons with disabilities in South Africa may be at risk, or not. For policy to be implemented in effective practice, we need to know what the risk issues are for disabled people in South Africa.Methods. This study draws on qualitative findings from a survey and interview study exploring organisational responses to the HIV epidemic for disabled people. Qualitative data were analysed using thematic and discourse analysis.Results. An analysis of comments made about risk factors for HIV, identified sexual abuse as a key risk. Furthermore, findings suggest that disability stigma may be a key factor on increasing disabled people's vulnerability in engaging in unsafe sex.Conclusion. The findings provide much needed exploratory findings, in an area in which little is known; useful for considering issues for HIV prevention. However, caution needs to be taken that these findings are not the perspectives of disabled people themselves, and may reproduce accepted discursive truths.

Purpose We investigated the relationship between disability and food security in South Africa using data from the General Household Survey (GHS). Materials and Methods Regression models were utilised with GHS data (2014–2018) to gauge the likelihood of food insecurity (the dependent variable) among individuals with disabilities. Socioeconomic and demographic traits of the 2018 GHS sample were analysed. All estimates were weighted and represented nationally at the individual level. Results In this study population (32 187) of food insecure people, 9.64% are disabled. Food insecurity impacts more Black people with disabilities (91%) versus those without disabilities (90%), and disabled women (65%) versus nondisabled women (58%). Most reside in KwaZulu-Natal. Those with disability grants lower food insecurity odds, while child support grant recipients face higher odds. Household size and education are significant predictors, while marital status and gender are not. Conclusion This study data justifies the need for disability-inclusive food security programmes in South Africa, especially amid crises like COVID-19. Significantly, there is a nil data finding about people with eating/swallowing disabilities whose needs intersect with food security. This emphasises the need for inclusive data collection that operates within a food sovereignty framework to increase the visibility of people with disabilities.

The South African Constitution asserts that persons with disabilities must have equal access to opportunities in society; however, the realisation of this mandate has remained a challenge. There is a need to create contextually relevant, inclusive structures that support equal access to opportunities for persons with disabilities in society. This article reflects on and highlights key considerations for an inclusive framework that facilitates access to opportunities for youth with disabilities in South Africa, which emanated from a study that explored how ongoing interaction with the performing arts can facilitate social and economic inclusion of youths with disabilities. The study adopted a qualitative research approach, using critical ethnography. Primary data were obtained from three focus groups with a total of 20 youth with disabilities who have attended performance events, as well as an in-depth interview with a disabled performer. The facilitation of access to equal opportunities for youth with disabilities must occur at a multidimensional level, involving both personal and systemic changes and levels of support. Complex barriers linked to the apartheid legacy also exist, some of which include access to resources and reduced self-determination, whilst positive factors such as internal resilience and skills development function as promising predictors of inclusion. Contextually relevant, disability-inclusive structures in South Africa must confront and address how youths with disabilities are uniquely impacted in present times by South Africa's history. The voices of youths with disabilities make a key contribution as their experiences must inform these inclusive structures which have the potential to enhance access to equal opportunities for them at both personal and systemic levels.

While many disabilities are observable, and thus are generally accepted by employers as requiring accommodation on the job (eg in the form of assistive technology, duty modifications and medical devices), psychosocial disability is not obvious. In fact, it is sometimes referred to as ‘the invisible disability’.1 This paper considers the challenges faced by people with psychosocial disabilities to access and retain meaningful work. It explores international and national legal frameworks and jurisprudence relating to the rights of persons with disabilities in the workplace, and demonstrates that challenges relating to regulation of disclosure; lack of clarity regarding the provision of reasonable accommodation and the undue hardship limitation; and societal and self-stigma remain significant barriers to the equal participation of persons with psychosocial disabilities in South Africa’s workplaces. I suggest that South Africa is failing to meet some of its obligations in terms of the Convention on the Rights of Persons with Disabilities and that there are weaknesses in the conception of disability inherent to the Employment Equity Act. To conclude, I offer recommendations relating to how these shortcomings might be rectified for the benefit of employees living with psychosocial disabilities.

Local research has utilized both practical (youth with disabilities accessing sexual and reproductive health services) and theoretical knowledge (decoloniality, disability and sexuality) to understand the sexuality of persons living with disabilities. However, this knowledge has not been utilized to examine the visibility of disability and sexuality in South Africa's comprehensive sexuality education (CSE) scripted lesson plans (SLPs). A content analysis was conducted of all the Department of Basic Education's CSE SLPs (Grades 4–12). The study indicated that only in Grade 10 is disability and sexuality discussed in 3 activities. Within these activities, some attempt has been made to demystify certain misconceptions about the sexuality of disabled bodies (i.e. as celibate, asexual beings, with no romantic or sexual interests). The activities further debunk how various types of disabled bodies are sexual beings (i.e. not just those in wheelchairs). However, the fact that these discourses only emerge and left in Grade 10, raises concerns about the inclusivity of the CSE curriculum for disabled youth (e.g. CSE not acknowledging issues of power and consent amongst youth living with disabilities). A critical discussion is provided of the gaps identified and recommendations provided by existing practical and theoretical knowledge to inform the current CSE SLPs.

Background: South Africa has migrated the responsibility for early childhood development (ECD) centres from the Department of Social Services to the Department of Basic Education. This functional shift has ushered in consultations and discussions on how best to implement ECD, including opportunities the change may bring.Aim: By anchoring the understanding of ECD services in nurturing care, this study aimed to elucidate the provision of appropriate, inclusive services in early childhood development, including early childhood intervention, for children with disabilities in South Africa against the backdrop of the migration of services from one government ministry to another.Methods: This is an analytical article based on South African literature on ECD services, including interventions, with particular attention to children with disabilities, basing our understanding of these services in nurturing care.Results: We elucidate how the ideals of the Nurturing Care Framework can be achieved in the context of children with disabilities in South Africa using five themes: the need to localise services, developing tools and strategies for screening and early intervention, enhancing the efficacy of caregivers, supporting and training staff and collaborations.Conclusion: It is necessary to empower caregivers and professionals to address early childhood intervention and ECD needs of children with disabilities. Early childhood development centres are an important context for nurturing care, providing opportunities to promote and sustain health amongst a large number of children. Considering the function shift of ECD services in South Africa, these centres are well positioned to further nurturing care to children with disabilities through the provision of supportive environments that promote health and well-being.